Monday, April 29, 2013

WC Day 29: It’s Always Something…..

This time, Chance is going inpatient.Not sure if you all remember, but he
and Abby had an appointment with our GI doctor when Madison was inpatient, and
from that appointment, tomorrow’s admission is taking place. After some talk
about where we go from here in dealing with Chance’s large bowel dysmotility,
it was decided that we need to do Colonic Manometry again, and see exactly
where things stand. So at least this admission is a little more “planned”, as
if that somehow makes it less stressful, right!?

To do the Colonic Manometry, we need to admit him the day
before and do a mega clean out while supporting him with IV fluids. Wednesday
morning he will go under anesthesia and they will place the probes needed for
the testing. Because anesthesia can slow intestines down, we then need to wait
till the following morning (Thursday) before doing the testing. The testing Thursday
will take a big chunk of the day, but then we should be discharged and head
home.

This testing is not fun from start to finish…..clean outs
suck; anesthesia makes Mom worry; laying flat on your back and not being able
to get out of bed for the better part of 2 days has it’s issues (although I
wouldn’t mind some forced bed rest sometimes); and getting through the testing
itself is not pleasant.

I am proud of my son.

This was HIS decision, and he made it even knowing what it
means. This will be his third time getting through the testing. He knows the
information is invaluable, and that we need it to guide treatment decisions, so
he is going into it with a good attitude.

He is a pretty awesome young man.

Now, in other news…..

Madison is continuing to heal like a (piggy) super star!! My
mom (who is again saving our butt by being here with the rest of the kiddo’s
while I am away) will bring Madison to me Wednesday for her 3 weeks post op
check up. This latest dressing allows for us to see more of what is going on
there, and as of Saturday, I swear it’s all but healed!! Our other big news on
the Madi front is that my amazing daughter learned how to do her own dressing
changes, even with some changes that made it a little more complicated, so she
was able to go out with her siblings and visit my mom and dad for a few days!!
I can and do a whole lot of medical care around here, and mostly with pleasure,
but really do not like wound care. Not sure why, but it is one thing that will
get to me faster than anything else…LOL. So for Miss Madison to be able to do
it herself, just means it’s not all on me, and I like that….a lot!!

Miss Abby is my favorite child right now, with little drama
(well the medical kind) and lots of hugs for her tired mom. She completed a
painting for Wish Night last week and did an amazing job. We cannot wait to see
how it does at the auction. I may have to pay her to keep being drama free for
me ;-)

And finally, Michael, my love.

He, like Abby, is mostly drama free, medically speaking.
Also like Abby, drama in general still sometimes happens. I still love him
though ;-) He took a nice long ride yesterday with friends, and thoroughly enjoyed
himself, even if the ride was cut a little short for him due to ostomy
appliance issues. A dear friend wrote about the ride on bike forums and said it
so well, I am going to quote him here…..

"The old worn out saw about
a picture being worth 1000 words would apply to that photo above. I bet there
are 1000 people who if they saw that picture would smile from ear to ear. All
day. All week.

That's what courage looks
like. I could never do that. Michael McNair can. He did. That takes some kind
of special spirit to overcome adversity and soldier on. It was 11 months ago
that through the large bay windows of Baylor's ICU unit that I looked down on
the spot along the Wetland Cells near the Freedman's Town of Joppa, Texas where
we were yesterday. Michael was on life support in the worst way, on a breathing
machine and in a coma after being hit by a car while riding his bike. Month and
a half in a coma. With all the noise of the machines keeping him alive, frankly
I thought this day would never come. But it did. The sun never shown brighter.
The wind never calmer. The wildflowers in full bloom."

It certainly made me smile from
ear to ear…..thanks for sharing this, Ben.

So, a first ride back down to some his old stomping grounds.

Another first since the accident happened over the weekend.....all three of our children were gone from home, overnight, at the same time, for the first time since last spring (at least). Yes, Michael and I enjoyed some child free time together!!

Michael saw a new PT on Friday
and should be starting some sessions with her soon. He see’s the orthopedic doc
on Thursday, and barring anything unforeseen, we should be able to get the needed
script from him then, and can get going with this. I have never had to work so
hard getting something dealt with as I have this cramping issue with Michael’s
shoulders. I am reminded sometimes how much more frustrating adult care is then
pediatrics…..and that is sometimes saying an awful lot. I think we finally have something happening though, and will
just be happy when it’s a done deal.

Okay…..dinner is waiting for me,
so I am going to go eat and then start packing for tomorrow’s admission. As always,
thanks for the thoughts and prayers.

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About Us

I am Heather, married to my high school sweetheart, Michael, for 28 years and we are the proud parents to three amazing young people. Chance is 23, Madison is 20, and Abigail is 18. All three are awesome young people that any mom would be proud of. They are kind, giving, loving, resilient, confident and selfless. They all also deal daily with the effects of Mitochondrial Disease (Mito for short). While they have Mito, they are not defined by it. We welcome you to this exceptional life we lead!!!